Stuck in the nineties

In case the subject header doesn't tip you off, this post contains material that may be triggering for people in similar situations. Please read (or don't) with care.

June is MND Awareness Month, and this week the Motor Neurone Disease Association is encouraging carers to speak about their experiences. My dad died eleven years ago, finally losing a battle that lasted somewhere between six and ten years, depending on your perspective.

I can’t speak for my sisters or my mum – their experiences are not mine to appropriate. Nor can I speak for anyone else caring for a loved one who has MND. Every experience is subjective. So this is how it felt for me.

I remember the tears in my dad’s eyes when he told me, over lunch, that he had MND. “The doctor says I’ll be in a wheelchair in two years and dead in four.”

I can’t remember my reply. I was twenty-three, with no idea of how to deal with this. I probably said something trite, made an attempt to be reassuring. I’m sure I was no help to my dad.

By this point he was already debilitated, although the disease was to a large extent invisible.

When he got home that day, my mum rang me. “Make sure he doesn’t walk so far next time,” she said. “He can’t do hills.”

My dad was a marathoner; less than a year previously he’d run the Great North Run (again – as a north-easterner, he ran it most years). Now he could barely walk up the hill from my parents’ house to the pub a couple of hundred metres away.

It was the late 1990s, the early days of the social internet. I researched MND, always looking for a nugget of hope. There was talk of one drug, perhaps another. My dad was put on a trial, but whether he was given the experimental drug or a placebo we never knew. I joined a couple of Yahoo groups for people living with MND, but was too shy to post anything, and I soon concluded that there was very little hope. Still, it helped to know other people were facing this.

My mum took early retirement to care for Dad. He wasn’t an easy patient. He hated his crutches; hated what the disease was doing to him. He’d struggle up to the pub, get drunk and accost strangers, asking them what they were doing with their lives. What were they doing to help vulnerable people in our society?

If anyone raged against the dying of the light, it was my dad. He was incandescent.

Things got harder. Because of my dad’s manner (which was partly due to frustration at his situation, but also, as we were to learn later, because the disease was affecting the frontal lobe area of his brain), he was treated badly by overworked medical staff who made certain assumptions about him. Staff in the care homes where he was sent for respite were even worse, and in some cases severely negligent. One day, I visited him at a “care” home where he was staying while my mum went away for a few days. He was white with pain and his catheter bag clearly hadn’t been emptied for far too long. I emptied it myself, spoke to the nurse in charge and told them they needed to check the catheter bag regularly. The next day, when my mum picked him up, it was full to bursting again, and he had a urine infection – obviously caused by staff failure. He didn’t go there again.

He didn’t go there again, but why should he have gone through that in the first place? There needs to be more understanding about motor neurone disease and how it affects people both physically and mentally.

Social services asked my mum if she wanted to make an official complaint, but all her energy went on looking after my dad and dealing with her own heartbreak. She had nothing left over for taking on the care industry. None of us did.

My dad went inward. It happened gradually, over a period of a couple of years. He stopped asking me to open a bottle of wine when he was too weak to do it himself. He stopped raging. He became quieter and calmer, a fading presence in the living room. I’ve never been sure whether this was the effect of the disease, or a conscious process of shutting himself down. I hope that it was the former, but worry that it was the latter, and that this was because we (I) failed him.

The problem of caring for someone with a terminal illness is that you can never do enough. We’re all human; there’s only so much we can do to make someone else’s life better. But knowing that doesn’t stop the guilt and self-recrimination, especially at three in the morning.

Every week, I’d sit with my dad while my mum went to choir – her one evening’s respite from the terror of home. I say terror because that’s how it felt to me. Sometimes I’d look at my dad and want to scream: how could this horrific thing be happening to him? Why wasn’t anyone stopping it? Why couldn’t anyone do anything?

Towards the end, carers came in most nights to help us get Dad to bed, but sometimes it was just me and Mum or one of my sisters. Slide him out of the chair into the wheelchair, over to the stairlift, back to the wheelchair, and then into bed. Pull his shirt sleeves over his wasted, contorted hands, empty the catheter bag, wipe his bum. Pretend this is nothing out of the ordinary so that if, by chance, the old Dad is looking out through those hooded eyes, he won’t feel quite so humiliated by it all.

I will still never know how he felt. Maybe that was his final rebellion.

I sat with my dad one evening a week, and also went over on Sundays. I’d greet him with a kiss and a hug; then Mum and I would go into the kitchen and make tea, and she’d unload everything that had happened over the past few days. When the kettle had boiled, we’d return to the lounge and switch back to carer mode, watching my dad in case he choked (he was on liquid food, but even that was too much by the end). I’d be as cheerful and supportive as I could. I’d give it everything.

And on the way home I’d pick up a bottle of wine because that was my own therapy at that point. Friends tried to be supportive but I had no idea how to reach out. I was the carer, the placater, the go-between who tried to keep everyone happy. I didn’t know how to ask for help while giving so much of myself. I hope other carers find this easier, because the way I treated myself during those years has given me a lot of grief in the time since.

June is MND Awareness Month, and this Sunday is also Father’s Day, which means that every time I walk into a shop, and every time I check my email, I am confronted by a reminder of what I’ve lost. And a reminder of that time in which the worst happened – to me, to my mum and sisters, but most of all to my dad.

I'm sorry for you and your mum. My sister and I understand as our father has ALS. It's a constant struggle and its so heartbreaking. Just when I may have a "break", it feels like I'm forgetting something. Also, so frustrating with the lack of knowledge and respect from medical professionals. You did the best you could do with what you were dealt. I hope you will one day find peace in your heart.

Your dad would have been so proud of what you did for him and you should have no regrets as you did a wonderful thing the way you cared and loved him. My dad died on New Year's Eve 2013 only diagnosed in April 2013. My dad was so fit and full of life and to think now he's not here is so hard to deal with.

Dad had frontal lobe dementia with it and in a way it was a blessing as he never understood what the doctor told him that day in the hospital. The dementia was a blanket protecting him for this terrible disease. I had to ask the doctor to repeat what he said as I couldn't believe what he was saying and those words that hit hard 'no cure'. I remember a couple of weeks before he was diagnosed I googled dads symptoms and MND popped up. I said to my sister 'no way it can't be that, no matter what he has he's not going to died'.....little did we know. We moved back home with my mum and cared for dad 24/7.it was so tough. We would take turns every night sleeping on the sofa listening to him just in case he choked. Carers would come in the morning to wash and change him and then that was it we care for him for the rest of the day and night. We feed him and put his drugs through his tube around 10 times a dad. It was exhausting but we didn't want it any other way.....he had the best care and love. We were right next to him when he took his last breath and he was so peaceful which the doctors said would happen, he would just stop breathing. It's unbelievable to think all that happens in 8 months. We miss him so much and the pain we feel now I don't think will ever go.

Just want you know we share the same experience and your not on your own. I just hope one day as the association say 'world free of MND'

We just need to enjoy life and remember out Dad's how they were before they got this awful disease and I'm sure your dad was amazing and wonderful just like mine and they went away knowing how much we loved them. We will see them again one day.

Hi Kat, and thanks so much for your comment. I'm so sorry you lost your dad so quickly - it must have been a horrendous experience.

I've been around long enough to know that there's no "good" way to go, but I do agree that in some ways the dementia was a blessing. For us it was a very turbulent time, as at first the doctors said MND didn't affect the brain - only four years later did they tell us they'd been wrong. So we had no idea why our dad was behaving so strangely until he started showing clear signs of dementia. I hope by the time your dad became sick the doctors were better informed.

It sounds like you and your family put everything into making sure he was comfortable over those last months. I'm so glad for you that you were able to do that - and that his death was peaceful in the end.

I don't know that the pain ever goes, but I can tell you it does get easier. It doesn't go away, though - you just grow around it, and I wouldn't want it any other way. As you say, there are loads of happy memories there beyond the pain, and we have to work to keep them.

Thanks for sharing this, L. I feel as if I'd heard parts of this story over the years but, like resuko, didn't realize the full extent. I haven't experiences anything comparable, but just listening to the strength and clarity of your voice as you tell this story is meaningful and helpful to me. M.